I remember when my dad had his stroke that took his speech. A brilliant man, a scientist, he was always a man of few words. Now he had none.

My siblings all live elsewhere. I pulled over in the car and nervously made the call. Though never close, we were at that moment. We were loving, supportive, a team. It was amazing how we rallied. I remember it like it was, as they say, yesterday. The closest we might have ever been. That moment.

Four years later, a heart attack, a near deadly infection and now in skilled nursing, it's hard to believe how much WE have deteriorated right along side my dad. I often want to stay in the skilled nursing and just curl up in a ball. My soul is as sick as it's ever been. Does that count for care?

I moved in to help my poor mom who is a worry wart by nature. She's guilt ridden, as though this is somehow her fault. It's taken a terrible toll on her. Insomnia, late night migraines, throwing up. No, I'm not exaggerating. It goes in stages but that's the worst. I hear her, quietly suffering, because she won't take my help, your help, or anyone's help.

My three siblings are living in three ways 1) wealthy retirement 2) beautiful village, not rich, but working hard 3) living by the rules of a religion many consider a cult so emotionally cut off from us. Though, well, we do get a weekly call. Yay.

When my dad was in ICU last month, we all had different idea's about what to do. I was deeply resentful that the two sisters swooped in while I had been there with my exhausted mom all along, trying to keep it together. Who were they all of a sudden telling us what to do? Unfair, you might think. At least they were there.

Wait, no, the religious one made a 2-hour appearance. The rich one took completely over, calling the doctors and nurses "the help". Yes, seriously. And the one in the village? She was the best. Strong, silent, there by his side, but yet so angry. An anger that has followed her for years. No idea why, but I miss her. The fun, adventurer has been gone for years. Now was this new angry person who, thankfully, was kind to my mom.

And so here I am. Tonight the skilled nursing said my dad needs a 24-hour sitter. My mom is 80 and simply can't. I finally landed a very competitive job that I love and I miss work constantly. I feel like it's just a matter of time before I am politely dismissed. I apologize constantly, co-workers don't know me and it's not their problem anyway. My mind sometimes drifts to this mess though I do find work a great, wonderful relief from the misery of this "new normal".

So what now? We have an assisted living facility picked out. If they will take my very ornery father, who falls constantly, it will be such a relief. Otherwise my mom wants to take him back home. Which would be a disaster. Just when I had forgotten the names of the nightly firefighters, they will be back, rescuing my dad again, whispering to each other that he seems "mentally ill". Nope, guys, he's always been that way. A dictator who does what he wants, a wife who doesn't argue and kids who never questioned. Except me. The family "rebel". Now he's just an older version of all that and that's one more thing to throw in the mix. Old childhood crap, rising to the surface.

I'm quite certain I will eventually fall apart, piece by piece, defeated.

Too many options, yet, not enough.No control, helpless to make any of this stop and get worse.

Caregiving is not just one person deteriorating. It's everyone falling apart. Together.

I guess I should be grateful for that? We are, alas, together again?

Meanwhile, it's strangers/friends who remind me I'm not losing my mind. They are the most kind, and loving. They remind me of what it is not to fight all the time, to have those undertones of resentment in every conversation.

So there it is. Thanks for listening. You are all I got, internet stranger. And it's everything.

6 Comments

Miafedup, I'm so sorry you are going through all this and I feel just like you.The people here on Agingcare are the most supportive,kind people in my life...Total strangers that "get me" way more than any of my family does.Your Mother and family are VERY lucky to have you.

Your religious sibling really made an impact with me. My father joined that door-to-door religion when I was in grade school and it was downhill from there.I have three sisters,, two of them will not talk to dad, the other one who left the religion as a teenager and now has a VERY hateful attitude toward all of us siblings.Dad lives across the country and this sister (from what I hear) visits him once or twice a year. I'm slightly buried with family responsibilities and flying out to visit is not that easy for me. Anyway, lots of secrets, gossip, and backbiting from this sister.Dad is now 78, and I'm starting to notice he is degrading slightly. My sister will not share anything from her visits with me, she just tells me to "go and visit him myself".pretty darn stressful.

If ever there were two siblings that didn't get along it was me and my middle brother. We never got along - not as children, not as adults.

Prior the the day when both my parents ended up in the hospital we had spent the previous 20 years pretending the other didn't exist - the result of a particular nasty fight. It made for really interesting Christmas family get together at the parents house.

Yet that day, I knew I could call him. After we settled our parents in to their new "normal" - we fell into ours. For the next five years it consisted of me doing 95% of the work with him sometimes helping - sometimes questioning and sometimes criticizing. But it worked.

Then my mother had "the fall" - the big one that was a game changer. Again, my brother stepped up and for the next three months we dealt with our mothers ramped up dementia and getting her into a nursing home. It was one of the toughest times of my life. Then we all settled into the new "normal".

Mom passed away this past August. Together we planned a small family memorial and together - with our oldest brother and our family's we scattered moms ashes - in the same place that together - four years earlier - we had scattered our fathers ashes. Afterwards we settled into our new normal.

For the next seven months I did the tedious work of an executor. Finally, I got the official okay to distribute the assets.

Last Monday my brothers came over to my house and I gave them their checks. Then we left together in my car and had lunch at a local brewpub. We stayed for a while - having a beer and telling stories of our childhood and of our parents. A few were sad, most were funny and we laughed. On the drive home my oldest brother asked me my opinion of certain banks and particular investment and it struck me that my older brothers no longer saw me as their dumb blond, kid sister. That all I had done over the past six years changed their notion of who I was - and I was glad. So now we settle into our new "normal".

I hear my moms voice in my head - what she use to say to me when I would complain about my brothers - "oh Rain! They are your family and you're going to need them some day". I am stuck by the irony - as always my mother getting her way - and having the last word.

Has your dad ever seen a geriatric psychiatrist? Strokes often lead to vascular dementia, and Van on top of pre-exisiting mental illness or personality disorder is a tall order for any caregiver. Meds might even things out a bit.

You should not leave your job. It's almost always a recipe for disaster. Read any thread on here and you'll understand.

Will AL be a high enough level of care? Does dad need a nursing home? Make sure you are understanding clearly what the discharge planners are talking about.

Your mom has made a choice to stay with your dad, dictator, mentally ill or not. You get to make the same choice, as have your siblings.

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